Wednesday, April 05, 2006

GROUNDHOG DAY IN APRIL

There has been much action on the scientific, political and media fronts in the ongoing debate over the connection between vaccines and the autism epidemic (and, yes, I will continue to use that word). First, was all the news out of the M.I.N.D. Institute, including the announcement of the Autism Phenome Project, and the release of a study showing damage to the immune system from thimerosal exposure. Then, we had the letter by eight members of Congress, led by Senator Joe Lieberman, calling upon the National Institute of Environmental Health Sciences to take a new look at the hypothetical link. Last week, at a press briefing that included Dan Olmstead and David Kirby, Representative Carolyn Maloney announced her legislative efforts to mandate further studies. And this week will see the Generation Mercury March and a DAN! Conference in Washington.

That much activity just naturally has to make for a collective case of the jitters among those who have a vested interest in denying any link between vaccines and autism. Their reaction was predictable.

A letter was addressed to the individual members of Congress by 22 organizations, pleading that there be no legislative restrictions on the use of thimerosal in vaccines. The groups’ rationale was open fear. Some people might interpret a ban on mercury in vaccines as being an admission that there is a problem, or that “vaccine safety oversight is inadequate.” Well, duh!

The 22 organizations declared that they “stand behind the enormous amount of scientific evidence that shows no link exists between thimerosal in vaccines and the development of autism.” Perhaps if they said they believe the research does not support a link, I could call their position a legitimate disagreement with the growing body of evidence of a link. But to say there is an “enormous amount” of evidence against a link is laughable. The 2004 IOM report cited the Verstraeten study, which even in its post-Simpsonwood version was labeled “neutral” by its author. The other evidence relied upon by the IOM committee consisted of foreign studies in which the level of exposure was less than the United States, and at least one Danish study changed the criteria for its pre-thimerosal-removal and post-thimerosal-removal cadres. Have I missed some startling revelation of the last year or so?

The other sign that the powers that be are worried is the resort to their favorite tactic. They trot out Dr. Paul Offit to let everyone know that no attention should be paid to the man behind the curtain. Just like Punxsutawney Phil, Dr. O emerges from his safe area, sees the shadow of bad news on the horizon, and then speaks reassuringly to those who don’t live with the issue every day. Just like Phil’s weather forecast, however, any similarity between Dr. Offit’s pronouncements and reality is purely coincidental. And just like the movie, Groundhog Day, in which Bill Murray lives the same day again and again, what we’re hearing from Dr. Offit is pretty much the same thing we’ve heard him say before.

“Every Child by Two,” an organization dedicated to promoting childhood immunization (this was one of the 22 organizations sending the letter to Congress), hosted a teleconference with Dr. Offit for the media. In her introduction, Amy Pisani, the Executive Director of Every Child By Two, noted that the purpose of the conference was “to discuss vaccine safety and legislation that’s being introduced in many states to ban the use of thimerosal in vaccines.” Of Dr. Offit, Ms. Pisani remarked that “he has the uncanny ability to make sense of the abundant research that’s been conducted around the world to disprove allegations that the preservative thimerosal that is in some vaccines ever caused autism in children.” That was an interesting introduction inasmuch as the bulk of actual autism research was barely mentioned.

The closest thing to a surprise in the teleconference was Dr. Offit’s admission that environmental insults may trigger autism in genetically predisposed children. In particular, he mentioned studies based on mothers taking thalidomide or being exposed to rubella, both insults having to occur early in pregnancy. To refute the connection between mercury and autism, however, Dr. Offit cited a study reportedly indicating that Rhogam use in pregnancy does not increase the odds of developing autism. According to Dr. Offit, that study was presented in March 2005 in Chicago at the American College of Genetics annual meeting. I must admit that I am unfamiliar with such a study, and if it was ever published, it is not readily accessible through a pubmed search. There is certainly evidence to suggest the contrary conclusion.

But the main rationale cited by Dr. Offit was, as usual, the same epidemiological studies on which the IOM report was based. He calls the results “clear and consistent and reproducible.” Apparently, Dr. Offit still labors under the misconception that the European studies, based on different levels of exposure than the United States experience, somehow reproduce and validate the “neutral” results of the Verstraeten study.

In the teleconference, Dr. Offit points to levels of mercury in the environment apart from vaccinations, and implies that an infant is more in danger of mercury poisoning from breastfeeding than from receiving a flu shot. He bases that argument not only on the volume of mercury involved (ignoring the fact that injection is a far more efficient means of introducing mercury than digestion), but also on thimerosal containing ethylmercury “a form of mercury which will be excreted much more quickly.” When a reporter later asked about the Burbacher studies, which demonstrate that ethylmercury is as dangerous ⎯ if not more so ⎯ than methylmercury, Dr. Offit moved the subject back to script with the aplomb of a presidential candidate at a debate: “again, I think ⎯ I mean, I think that ⎯ you know, there’s nothing as strong, frankly, as the epidemiologic studies.” As usual, Dr. Offit did not wander far from his comfort zone. There was no real discussion of any studies that might point to conclusions he won’t like.

Paul Offit is now taking the show on the road. On April 11th, he will be the featured speaker at a seminar in Jacksonville, Florida, entitled Vaccines and Autism: The Provider’s Role in Communicating Vaccine Safety. Soon we will have lots of Offit clones all telling us that there is nothing to worry about, and we should trust people who must be lots smarter than the rest of us. Interestingly, there is no fee for attending the seminar, but that can be explained by the acknowledged “commercial support” for the program from GlaxoSmithKline, Merck & Co., Inc., Sanofi Pasteur, and Wyeth Vaccines. At least those sponsors were up front about their interest in presenting the program; Dr. Offit reports that he has “no relevant commercial relationships to disclose.”

Punxsutawney Phil seems to be a genial fellow who can entertain a crowd. But I wouldn’t want to place my faith in his forecasting skills. Is it any wonder that Punxsutawney Phil and Paul Offit both come to us from the great state of Pennsylvania? Hey, wait a second . . . isn’t Dr. Offit from somewhere around Gladwyne, Pennsylvania? Could it be???

Before I close this one out, I just wanted to extend best wishes to all who will be at the rally and the DAN! conference in Washington. While at the conference, keep an eye out for my spouse, Sym, and go say “hi.” And if you see her on Saturday, remind her to call home and wish her husband a happy anniversary.

I am the one who is “amazed.” I am really quite amazed that you can lump everyone into a "you guys" group. There is no unanimity on either side of the debate.

I agree wholeheartedly that IDEA numbers are not necessarily probative of actual prevalence. Any statistical analysis is subject to too much "interpretation." The fact that the same numbers have been used to prove both the existence and the non-existence of an epidemic shows that. The educational numbers can be illustrative of trends, but cannot prove the trend.

How about that total figure of 1.5 million Americans with autism? Do you agree with that, too?

The "1 in 166" covers the whole spectrum which shades out, fades out to near normal, and which wasn't counted a few years ago. You know that, right?

1 in 166 is the "high and stable" number that Fombonne uses. 1 in 166 now, 1 in 166 50 years ago. If you can't see that, you've been blinkered. There has been no autism epidemic. We should see a statment to that effect from the MIND Institute and others soon enough. Those who believe in the epidemic have been suckered and will soon look like "flat earthers." Just a little heads up for you and your conspiracy believing friends who are marching on Washington today.

Well, “amazed,” it’s a bit off-topic, but I’ll satisfy this one bit of your curiosity. I do not agree with the 1.5 million number that’s been carelessly bandied about by some advocates. The one-in-166 number, according to my understanding, refers to the prevalence among children born during specific years. That prevalence may be more or less at the moment, and it does not necessarily mean that the number has remained stable through the years. There is certainly scholarly disagreement about the prevalence out there. I know many have a deep respect for Dr. Fombonne (indeed, Autism Diva’s respect borders on a teen-age crush), but there are other opinions out there.

Like Wade, I am also amazed. Obviously he can defend him self admirably but I feel that this kind of comments have a content ofintellectual despise that is inaceptable to many people, like me, that is included in the "you guys" group because of certain way of thinking, questioning everything. Many times my way of thinking is not known, or even there is not interest to analyze - or to know-or to ask WHY. The rush to have final conclussions is too much. I can understand that all we carry personal beliefs but in autism field we are living in a world of personal beliefs.Like Wade, I think that there are in general more developmental problems around the world today than 20 years ago. But with the data available I can not say how much more. Like Wade, I do not agree about the amount of autistics that many advocates mention for USA. I do not agree and dislike how a so important health condition of our children is used by one or other agenda to gain points. I do not agree with the jumping to treatments using a grain of serious science and a lot of especulation BUT also do not agree with the tone of final conclussion that many times some people at both sides of the debate use and abuse.The IDEA numbers can not be used to prove an epidemic but also cannot be used to discard for sure an environmental insult- whatever the source in the reported numbers of ASD. It is also amazing to me how quotations of this kind are used

Have you read the new study refuting the use of the IDEA numbers, the ones you guys love to quote?

I would want to know who "you guys " are and also allow me please a clarification. Dr Paul Shattuck has been so intellectually honest to say that an environmental insult cannot be discarded. This is scientific honesty, why are you using this study to supposedly prove something the same author agree he can not prove with his own study?

Why once and again partial quotation of research are used to present as proven facts for sure personal beliefs?- and this is a problem with both sides of the debate...Why do you sustain that all is said and done if we do not know- BECAUSE WE HAVE NOT DATA- if now the clinical presentation has changed for example from viral contribution to autoimmune- beyond MR or epilepsy? How do you know if similar behaviors have not totally differents roots? What about severity? What about ADHD, that is considered also in the spectrum, for example? What are the numbers 20 years ago and now? We do not know for sure because of changes in many other variables therefore this is a "nudo gordiano" -do you remember Alexander Magnus?? but the solution is not to cut it in this situation. .The same author and the commenter of agreed that perhaps we will never be sure of what really happened. I think like them. Considering the lack of trustable numbers, all we have is guessing and personal opinions because we do not know the causes of autism at individual level TODAY.My feeling is that all we are living in crystal houses of thin walls (one thinner than others).. Mine has several holes for example-because there are many things that are not known or need to be confirmed but I am very aware of this..There are two far away from the others crystal houses and the people that live in them think that the crystal houses are.... Stainless steel castles and see all the others houses made from crystal and convinced that the ones they own is strong stainless steel. I assure you that the best way to become damaged very badly is to be ... in the middle of because you receive several of the projectils only by being in the middle...from both extremes. However, I have maintained and will maintain this position because I think that is the most productive and respectful- in the search of the truth more than to be right.

When you adopt this position , generalizing and being sarcastic for free, you cut the "nudo gordiano"-but do not solve the situation, only left unattended- and shut the door of productive interaction.

I'm feeling bold. Seriously people...it's an epidemic! I appreciate your scrutiny and skeptism...studies analyzed and scrutinized...incidental evidence the same. Iv'e been around long enough to recognize the changes...

"Dr. Offit cited a study reportedly indicating that Rhogam use in pregnancy does not increase the odds of developing autism".

- I believe that the study he was referring to was done by Judith Miles and was presented at the Americal College of Medical Genetics (so I have to assume that it's the same one). It concluded that "there is no indication that pregnancies of children with autism were any more likely to be complicated by Rh immune globulin/thimerosal exposure than those of controls". Now, here's the interesting part. According to David Kirby, the study was funded by Johnson & Johnson who are also the maker of Rho-Gam and have been named as a defendant in a number of lawsuits in regards to the issue. Possibly someone can show me that Kirby is wrong here (I am open to it). Clone was supposed to be looking into it, I think :) Also, certainly it doesn't mean that we need to completely ignore the study and I'm not saying that Judith Miles is an unethical researcher, however, it does smell of a conflict of interest. Did Offit mention that possible conflict of interest when he cited the study? I'm guessing not. Wish I could find the link to the study (at one point I had found it) but can't right now and have to head out...

Did Offit mention that possible conflict of interest when he cited the study?

As a matter of fact, he didn't. But then Dr. O doesn't think conflicts of interest can exist -- even technically -- if the researcher is nice and really, really cares about people. I'm sure Judith Miles is a nice and caring person, and Paul Offit would probably make a genial dinner guest. In my line of work, however, we take conflicts of interest very seriously.

Why can't we all just agree that there are a lot of people with Autism Spectrum Disorders, whether the numbers have increased or not? In any case, more resources need to be devoted to autism than in the past.

The reason why we can't agree that there are alot of people with ASD now and that maybe just possibly that number has been stable for several (dozens of?) generations, is that the lawyers and organizations like SAFE MINDS intent on suing the gov't for supposed damage to kids by vaccines have been using the IDEA data to say that there is an exact correlation between the increase dosage of thimerosal with the incidence of autism. The more thimerosal the more autism.

But this is a patently obvious lie. The use of thimerosal in vaccines doesn't map onto autism prevalence, not here and not anywhere in the world.

The Shattuck study says, the numbers can't be used to support an epidemic. But the mercury parents need their epidemic in order to scream "a generation of children have been poisoned by the CDC".

The mercury parents aren't saying, there are a small number of susceptible children, maybe 1 in 10,000 that were harmed by vaccines. They are saying that the bulk of the 1 in 166 were made that way specifically by thimerosal in vaccines.

This is a lie.

The parents believe the lie because they have quacks sending them to Doctor's Data lying labs for horrifically misleading results.

Take away the provoked Doctor's Data labs and you don't have parents who think that their kid was poisoned by vanishingly small amounts of thimerosal in vaccines that seem to multiply over the years into a never-ending font of mercury in the kids.

The "epidemic" depends on there being no 1 in 166 adults on the spectrum. But there have been 1 in 166 adults on the spectrum. They've just been misdiagnosed in the past and an autistic adult who was PDD,nos as a kid, doesn't look like a big PDD,nos kid. He or she could look pretty normal, or like an oddball or weirdo, but without a particular diagnosis.

The thing about Fombonne, Wade, is a joke. Sorry, you missed the point of the joke. I know some people got it so it must have been a little successful as a joke.

The MIND institute is convening a Task Force on the "epidemic" I fully believe that the result of that will be the beginning of the end of the "epidemic lie" in the US. I think they are going to throw the Byrd report in the shredder and pretend it never happened.

If you go to the National Autistic Society website, you will see that they tally up a total of about a half million autistics in the UK, but fully 2/3 of those are older than 18, they are distributed throughout all the age groups equally apparently. There is no reference to anything like an epidemic on the NAS site. But Blaxill will tell you that the UK and the US had the same epidemic... but Blaxill is a twit and has no idea of what he's talking about and he's heavily invested in the lawsuit thing, if not personally he's a leader of those who are suing.

There is no connection between mercury and autism with the possible exception of early prenatal exposure.

There's some evidence that stress coming from hurricanes in the New Orleans area causes autism if the moms are in their second or third trimester when the hurricane hits. It's an abstract going to be presented at IMFAR... or it's one of big pharma and Paul Offit's dirty tricks to protect Eli LIlly, right?

Anyone who denies the existence of 1 in 166 autism *spectrum* adults denies funding for programs that could help these people. If the programs were underway NOW your kids would be in a better position to get help, but people with shortsighted goals of suing vaccine manufacturers don't care, the want their money now. Right? So they can pay their DAN! doctor's now, Right? That's my impression.

Yes, Camille, I recognized the humorous tone in your piece on Fombonne. Apparently, you missed the humorous intent of my comment. That’s no surprise; I think we’ve already established that our senses of humor do not always mesh.

There's some evidence that stress coming from hurricanes in the New Orleans area causes autism if the moms are in their second or third trimester when the hurricane hits.

This is the first I’m hearing of this hypothesis, but given the level of toxic damage to New Orleans after the storm and flooding, particularly considering the high levels of lead in the soil of some areas before the storm, I’m a little skeptical that a credible causal link can be made with emotional stress.

"This is the first I’m hearing of this hypothesis, but given the level of toxic damage to New Orleans after the storm and flooding, particularly considering the high levels of lead in the soil of some areas before the storm, I’m a little skeptical that a credible causal link can be made with emotional stress".

- Also, how about all those free tetanus and flu vaccines given out... you know, just in case :)

Can it be? Is the famous Autism Diva actually advocating a theory about causes of autism that don’t involve brain structure at birth? Puhleeze! Stating that psychic trauma can cause autism makes as much sense as the “refrigerator mom” theory.

Rick Rollens a twit? I don’t think so. In fact, he’s smart enough that if he needed some information on artists of the 17th Century Dutch School, I’m sure he would know to call on you. After all, that’s your specialty isn’t it Camille?

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